Finding My Craniofacial Tribe

There’s no denying that. Maybe it’s not as noticeable now, but the truth is I wasn’t like all of my peers. Not completely anyways. I had appointments with reconstructive surgeons. I received copious amounts of stares out in public. And I knew the ins and outs of my local children’s hospital. It was all thanks to my craniofacial abnormality. But I didn’t mind being different then and I certainly don’t mind it now either. It’s who I am and I’ve learned to embrace it.

In high school, a teacher posed a question to my class of predominantly Caucasian students. How many of us had ever been the minority? No one raised a hand. It wasn’t until a while later that I realized I was a minority. Every single day I was someone with a deformity, something that no one else around me had. I just tried never to focused on it.

The first time I met anyone else with Treacher Collins syndrome I was a teenager. It was a quick encounter in the elevator at my surgeon’s office. The other mother wanted to take a photo of her daughter and I together, but I just longed to leave my appointment. I didn’t feel the need to validate my syndrome at that very moment.

A few years later I begrudgingly attended a camp for kids and adults with craniofacial differences. I admit that I was incredibly nervous before arriving at this camp. I had grown up without receiving support from any other person with TCS. Why did I need it now? My mindset quickly changed once I entered the camp and had the pleasure of getting to know four others with TCS, plus numerous other people with facial anomalies. As the conversations started, we clicked over shared hospital experiences and hearing aid stories. I had found my tribe, a tribe I never knew I needed. We related to each other in ways we could never relate to the people who normally surrounded us.

Fast-forward about fifteen years. The craniofacial camp I once attended had long since been dismantled. I lost contact with that tribe and hadn’t found a new one. I retreated back to the mentality that I didn’t really need the support.

I was wrong.

One of the main reasons I wrote my book, Diary of a Beautiful Disaster, was to connect with others in similar situations as myself. I wanted to show those with craniofacial anomalies that though we each have our own experiences, we are never alone. My book ultimately brought me back to the craniofacial world and helped me realize that I still did crave the bond I formed at camp years ago.

Over the weekend I attended another retreat, a much larger retreat, for kids and adults with craniofacial differences. Even though I did crave relationships with others who understood TCS, I admit that the many years apart from those relationships left me nervous for what the weekend had in store. Was I ready to confront my past in such a huge, tangible way?

Just like my very first craniofacial camp experience, I had absolutely no reason to doubt what was to come. I immediately felt welcomed home by a family that I never knew existed but now couldn’t imagine my life without.

You see, most of you who are reading this cannot understand the overwhelming sense of relief that comes when you realize you are no longer the outsider. Truthfully, I don’t normally feel like I’m an outsider in my daily life but it wasn’t until I came to this retreat that I felt that same sensation of wholeness that I did fifteen years ago. It’s a wholeness I will never be able to adequately describe in words, because words simply don’t do it justice.

I found my new tribe: the people who didn’t bat an eye when the dance paused because someone’s hearing aid accidently rolled onto the crowded dance floor; the people who dropped surgery dates into conversations like it’s no big deal; the people who talked freely about doctors, hospitals, and insurance because any advice helped. I found it oddly refreshing to share those connections because they served as a reminder that none of us was alone in our craniofacial journey, whether past or present.

I know I am very fortunate. I grew up with classmates who never judged or bullied me, and gymnastics friends who always made me feel included. But unfortunately it’s not like that for everyone with a craniofacial anomaly. This retreat, however, offered a chance for those children (and adults) to release the judgments that others place on them on a daily basis. And, if I’m being honest, the judgments we also place on ourselves.

I’ll never be able to fully explain how happy it made my heart to witness kids with Treacher Collins syndrome, little mini-me’s, running around so carefree. While my syndrome is much less prevalent now, I looked at these kids and saw my past. I saw who I was in my youth. I saw the child who just loved to play and asked to be accepted just the way she was.

This retreat was a chance for all children with facial differences to just be children without the fear of persecution. They could run around the hotel with their new friends and not worry how anyone else would treat them. Likewise, it was a chance for their parents to release the unspoken weight they had been carrying through their daily lives: the worry, the stress, the fears.

As for the adults with craniofacial differences like myself, it was a chance to inspire. I met so many adults who yearn to change the way the world views our differences. Many of us are writers, speakers, and storytellers. We have dreams of making life easier for the future generations of kids with facial anomalies. Of course, we also came here to learn from each other and to feed off of each other’s strength. We realized that we have to teach each other how to stay confident no matter what people say about us and how to bounce back if we fall into a downward spiral. We’ll all have those moments at some point and it’s comforting to remember how someone else reacted to similar situations. That’s our support. That’s why this tribe is so important.

Thank you CCA for reminding me how important these relationships are. You all have encouraged me to keep fighting my fight, sharing my story, and working towards a better tomorrow.

We can’t expect to change the world on our own.

I strongly encourage anyone with a craniofacial difference to consider attending a retreat in the future. You may not think you need it (I’m a great example of that), but there’s a huge comfort in being surrounded by people of all ages who fully understand your life.